Question about Marfan syndrome

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    I am a second year nursing student and currently in my Ped. rotation. I recently watched an educational video on Marfan syndrome. I learned that this disease is a genetic disorder, and if a patient is suspected of having the syndrome and there is a positive family history of it, the patient's risk of getting the disease is increased. I also learned about management of this syndrome. However, the video did not really specify exactly waht Marfan syndrome is. It was also difficult to understand. Has anybody had experience with caring for patients with Marfan syndrome? Can anybody explain what it is and certain compications associated with it? I would appeciate any inforamtion. Thank You
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  4. 14 Comments so far...

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    First, I do not have any experience of this so I am hoping others will respond to you as well.

    I am a Biology Major, but I am contemplating changing to the nursing program. Do you like nursing school? I am afraid I won't make a good nurse so I am undecided about attending nursing school. I cannot think of anything to do with a biology degree and I love clinical care so there is my debate.

    I do not know much about nursing, but I however have taken anatomy and physiology as I know a little bit about it.

    Marfan's syndrome is a connective tissue disorder that has to do with bones. If you see people with long slender limbs this is one of the ways to identify marfan's syndrome.

    It results from excessive cartilage at the epiphyseal plate (growth plate). As you know our bones grow by ossifying cartilage into bone at the epiphyseal plate which lengthens our bones. (This is how doctor's can tell us if we are going to grow anymore by our X-rays you can see the spaces on the x-ray -evidently they have more cartilage and space at these growth plates which results in marfan's.)

    There are other diseases that are affected by this like the opposite of this would be achonddroplasia whith also results in the growth only in this case it grows slower and adults appear to have short stocky limbs.

    I wish I could give you more information, but I am still learning as you are. If you would like to look it up though check out an anatomy book under skeletal or connective tissue disorders. Find out how the bones grow and are formed and you will understand these disorders better.

    I hope that might help a little bit.
    Good luck with your studies!
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    Just a short note to add:
    Individuals with Marfan syndrom often need cardiac surgery due to the risk of aortic aneurym
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    There is a website www.childrenheartinstitute.org. It contains lay person information for parents about congenital heart defects. It has simplistic explanations, but I think it does a great job of explaining everything. There is a specific section on Marfan's. Check it out, as a nursing student I think it would be very helpful to review the sections on ASD, VSD, Tetrology of Fallot. I remember in nursing school I had sucha a hard time remember all of those. Good luck to you.
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    I'm going to be a junior in a BSN program, but I do know a friend with Marfan syndrome. It is a syndrome of the connective tissue if i can remember right. Its categorized by very long limbs, and people with the disease are at a great risk of cardiac problems because the major vessels can become very thin. The person I know with it had major cardiac surgery when he was only 5 years old. I also know that the disorder can affect your eyesight too. Hope this helps
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    I cared for a 20 some yo that died from his aortic aneurysm that had Marfans. He was not a surgical candidate.
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    My youngest sister has marfans syndrome. During her childhood she would become fatigued during exercise, my mother labeled it as "laziness" signed my sister up for Basketball , swimming, bike riding, track.....my sister was extremely thin, long boned, and odd looking child with big blue eyes.... My sister was seemed sickly alot. A chiropractor female friend of my dads was so worried about her that the friend insisted my dad take her to a pediatrician . By this time my sister was 13, my parents were divorced (hence a retarded, continuing argument between mom and dad over insurance an dhealthcare cost) Any ways she was diagnosed... It is a cartiligenous defect,and more so a collegen defect, in that the parts of our joints, eyes,skin, heart valves etc... that can expand with exertion and return to normal size..(the aorta) do NOT for these people.. strenuos exercise is DANGEROUS for them... as they age because of the aorta they become short of breath,tired alot, and are always at risk for aortic anneurysm. My sister when diagnosed went under the care of an excellent Pediatric Cardiologist who followed her health into adulthood,and referred her to an excellent adult cardiologist.. Sis married, GOT PREGNANT to all our horror.( on purpose)at age 25. WEnt into V-tach at eight months..had a c-section... a healthy child. At age 30 she became so fatigued just with walking to the car... her cardiologist had followed her aorta size every 6 months.. (the aorta had enlarged) at age 30 she had aortic valve replacement..... She now has a 7 year old child, a wonderful husband teaches school, is envolved in her families life...and has more energy than ever before and very few boughts of colds and sickness..Clinically she was and is a prime example of MARFANS.....Mom thought she was lazy.... MOM is blessed now with a more healthy daughter and wonderful grandson. I have 4 children and am researching the genetics of Marfans....
    Last edit by CMERN on Nov 4, '02
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    people with marfan are usually very tall with long thin limbs and fingers. they often have ophthalmic problems- due to the shape of the eyeball

    Karen
  13. 0
    Abraham Lincoln had this disease.


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